May 14, 2010 - 9:45 am

So Matt came in this morning and we discussed the MRI.  The MRI ruled out a bunch of stuff (like most the other tests :) He said it did show something around some of the ventricles in the brain - he then said this may or may not be anything - but something to follow up on definitely.  He said it could be an indicator that something is going on metabolically with her.  Like maybe some sort of enzyme deficiency, or some heavy metals in her system, or something metabolic.... So the MRI did not show anything else - no masses or anything like that.  There will be some follow up with that - some that are already in the works as he said they had a BUNCH of blood tests out that we were waiting results on.  The took additional blood when she was out for the MRI.  Also last night they wanted a urine sample and were going to "bag her" (attach a bag down there to catch some - which is taped to stay in place) I suggested on waiting and giving us a chance to get one by having her go in the toilet... Well we got her to go in the toilet and got a sample!  So another discomfort averted :)
When Matt stopped by this moring Ali and I were playing "Monster" :)  he just stayed in the corner and watched for a while... When Ali finally noticed him, she was actually ok with him there and I got her to say hi to him.  He said it was nice to see what her personality was like before all of this :)  I think now Matt has just about seen at one time or another all phases of Ali :)
She did actually sleep better last night - still up at 11:00 pm rolling around and in discomfort but went back to sleep for a couple hours before repeating the cycle a couple more times - but she definitly slept more last night than she was awake :)
I am sure I forgot something we discussed with Matt this moring but rounds are coming and we will go over it again.. Also I am going to ask if we can get her disconnected from some of her stuff (heart rate monitor, oxygen level monitor, feeding tube line, IV) it all makes for a tangled mess the way she moves around... And a whole lot easier to get her up and maybe walking a bit if she isn't all tangled up :)  Hoping we can atleast disconnect the IV too - keeping it in her hand just in case they need  it... We'll see.  It is kinda interesting to look at her patterns on the monitor verses when she is agitated and is relaxed - but the constant tangling I could do with out :)
Ok I'll try and absorb some more after rounds and update a bit later... Since Ali has been up today about 8:00am she has been in a relatively good mood :)  once or twice her tummy hurting a little but got through it without any episodes... Maybe she just needed an MRI to zap her back to normal lol.  Crossing our fingers we see more of this....